I was diagnosed with severe Crohn’s at eight years old. Getting through each day was such a struggle but over time I learned how to better prepare myself for being out in the world. I had to plan ahead for any possibility every time I left the house. Eventually that turned into carrying a giant purse with literally everything but the bathroom sink. Here is a list of the basics I made sure to never leave home without.
I always had toilet paper, cut into portions and folded or rolled, in a little ziplock bag. This was insurance in case I found myself in a public bathroom with no toilet paper or very rough toilet paper. Still to this day, I also always keep a roll in my car and take a ziplock of TP when I’m traveling. Always having toilet paper in easily accessible places has been a lifesaver so many times!
AN ENTIRE CHANGE OF CLOTHES
It’s depressing to think about the number of times I had to change my clothes because I didn’t make it to the bathroom but that was the reality I dealt with for many years. Not only would I need to change my underwear but sometimes the pants/shorts/dress/skirt I was wearing too. So I had to have everything with me including new undies and maybe a even a different bra, a shirt or dress, pants, shorts or a skirt and shoes to match the new outfit. And large ziplock bag to contain everything. I had to be sure I had everything I needed before leaving the house in the morning. I had to be sure to have socks if I needed them or a certain pair of panties or bra depending on the outfit I would be changing into. I tried to coordinate as much as possible so I had to change the least amount of things but the amount of planning and packing and unpacking that went into this was exhausting. Then I had to be ready with an explanation as to why I changed my entire outfit. For many years I would try to think of lies that seemed less embarrassing but eventually I gave up the charade. People knew I was sick. Why keep pretending?
BABY OR SHOWER WIPES
I had these for the obvious reason but also to wipe down my whole body. I might have had an accident and couldn’t take a shower so I needed to get cleaned up or maybe I got very sweaty and just needed to refresh a bit. If it was an especially difficult day and I had used all of my own toilet paper and felt too sensitive to use the rough paper available, these wipes really came in handy. But please remember to NOT FLUSH them! Even the ones that say they are flushable.
I used to apply deodorant multiple times a day. I sweat a lot. My body doesn’t regulate temperature well and while I’m always freezing, I’m also usually sweating. Sweaty cold as I like to call it. My favorite deodorant is Dove but I would like to find a more natural alternative. I’ve tried some “natural” deodorants in the past but always end up back with Dove. If anyone has found something they love that rivals Dove, I would love to hear about it!
I don’t like perfume. They often smell too strong and overwhelming. Nowadays I don’t wear any scent but for years I was a collector of body sprays. I had to be careful because some scents also made me nauseous and gave me a headache like perfume but I loved smelling good. I might not have felt good or even looked like a living person but at least I could smell good. It also helped me be less self-conscious about being stinky and sweaty.
MAKEUP WIPES, MOISTURIZER & MAKEUP
In addition to having constant emergency trips to the bathroom, I also threw up a lot. As a result I would get very sweaty and would need to redo my makeup. I keep my makeup very minimal and probably don’t really know how best to apply it but I can do it all in just a few minutes. I would wipe my face and neck clean, not only to get off the makeup but also to get the sweat off. Sometimes I would also wash my face in the sink but public bathrooms gross me out and I usually didn’t feel clean after doing that. Then I would apply a little bit of moisturizer followed by light liquid foundation, often a shitload of concealer cause my skin was in bad shape back then and pressed powder. I would always use mascara but that might be it for the eyes. If I had more time, I might use a little eye shower and liner but I was often fighting back tears during all this so eye makeup was usually difficult to apply.
TOOTHBRUSH & TOOTHPASTE
As I mentioned above, I threw up a lot. Most days I was brushing my teeth around eight times a day. Brushing my teeth became a bit of a compulsive habit. Even if I didn’t throw up, I often felt compelled to brush my teeth. When I was in high school, I was diagnosed with acid reflux. I had really gross acidic burps all the time and that contributed to my desire to constantly brush. So I carried around a small travel toothbrush and travel tube of toothpaste everywhere I went. I also often had a travel sized bottle of mouthwash.
I hate chewing gum but I usually had some in case of emergencies. Maybe I couldn’t brush my teeth and wanted to get the acid burp taste out of my mouth. Or maybe I still felt nauseas and chewed it as a means of settling my stomach. Spearmint is my favorite flavor.
HAIR TIES, CLIPS & FLAT IRON
I have a lot of hair and I’ve always kept it long. Having it pulled back usually gives me a headache but when I was throwing up or felt like I was overheating, I had to pull my hair up. My hair is naturally curly but for many years I wore it straight. Sometimes I would get so sweaty that my hair, especially around my face, would get wavy or frizzy so I would touch it up with a little flat iron. Pulling it up would often crease it so I would often touch that up too. I didn’t always have the flat iron and often I was in places where I couldn’t have used it anyway. But when I did use it, I made sure to keep it in a sleeve that would absorb the heat, otherwise I would have to just wait for it to cool down before I could go on with my day.
I wore pantyliners most days. Not only to give myself a little peace of mind when it came to bathroom emergencies but also because my periods were crazy and unpredictable before I was put on birth control at 15.
I used to be a chapstick junkie!! Since I was a small child, I’ve had the nervous compulsive habit of licking and chewing my lips. I’ve gotten better about this over the years and rarely use chapstick now but it seemed like my lips were in a constant state of chapped and cracking for years. All the throwing up didn’t help either.
BAR SOAP AND NAIL BRUSH
I’m sure it comes as no surprise that I also compulsively wash my hands. Having an autoimmune disease has certainly contributed to my germophobic and OCD tendencies. Going into a public bathroom that has no soap is like something out of nightmares for me. I also hate the cheap soap most public bathrooms use so I would carry my own. In addition to this, I often carried around a nail brush to not only clean under my nails but to also scrub my hands when I felt particularly contaminated. Eventually I switched from soap to hand sanitizer and stopped carrying around the nail brush. I needed to give my already raw and sensitive hands a break but I didn’t like having wet brush in a baggie in my purse all day. That seemed dirty too.
I have chronic dry eye so I used to use eye drops all the time. But dealing with a disease like Crohn’s day and day out can also be so depressing. I cried a lot. Then I would return to whatever I was doing and try to pretend like I was fine.
I of course needed lotion for my very over washed hands but I often didn’t use it because I don’t like the smell of most lotions and I hate how lotion feels on my skin. Plus I was just going to immedicably wash it off anyway so I often carried it around and didn’t use it. I still struggle with this today. My skin gets so dry but I don’t want lotion on me. I recently discovered an Ayurvedic technique called abhyanga massage. In short, you massage oil into the skin and then shower. I love it!! It moisturizes my skin but I don’t have to have stuff on me all day.
I used to have a really hard time eating so if I felt even the slightest bit hungry, I tried to take advantage of that and eat, even if it was just a little snack. But I had to be careful that it didn’t smell much. My sense of smell is very sensitive and I used to feel so nauseous and even throw up from just the smell of some things. I mostly stuck to things like crackers or maybe candy when I felt I needed a quick sugar boost.
You’re probably reading this and thinking that my purse must have weighed a ton…and it did! Every time I carried my purse, I would have deep red indentions for the weight on my shoulder. You can also see from the list above that I didn’t even cover the basic things that the average person would have to carry like a wallet, keys and sunglasses. I had all of the standard things too. Sometimes I would carry a massive heavy purse in addition to a backpack or other bag just so I could fit everything. I was terrified to not be prepared and could rationalize the need for all of these things. Lugging it around every day was physically and mentally exhausting.
Fortunately I no longer have to carry an IBD purse. Gradually over the years of being in remission, I’ve been able to downsize and feel confident leaving the house without these things. These days, I carry a tiny clutch that is barely large enough to hold my phone and keys. Sometimes I even venture out with nothing and just have my boyfriend hold my phone. While I still have moments of panic and of feeling naked, it’s incredibly liberating to no longer need to lug all that stuff around.
If you have IBD, I hope that one day you too can feel the freedom of walking out the door without planning and anxiety. You don’t have to carry the weight of your illness alone. Schedule your complimentary consultation with me today and let’s talk about what’s in your IBD bag!